Tipps and Help to go through

Hello everyone,
I was diagnosted with an AVM right parietal lobe - don´t know which size, after a Grand Mal seizure two weeks ago. I got my Diagnosis on my 38 Birthday last friday. since then I am so full fear and anxious. I have an appointment with the neurosurgeons on 18. August. I really don´t know how I should go through this time. I cannot eat or drink, barly sleep- there´s only this thing around my head and I am getting up every morning with nausea and this horrible feeling in my chest. I am unable to do anything - I just have to force me for everything. I am feeling so bad. I am reeding round the net everything I can find bout AVMs and I am happy I found this group so I can read here. But does anyonetipps how to get through this anxiousness nad fear - and what helps? Thanks for everyone here.

Welcome to this site!! I found this site to be a savior for me thru my AVM recovery and am so thankful to have found it! The only tips that I can offer is thru my own experience and will tell you that I had the same feelings of fear, anxiety and intense worry and please know that this will pass. I had never heard of an AVM before my diagnosis back in FEB of this year and, believe it or not, I now know that this was a blessing in my life and have such an amazing outlook on my new life. Please feel free to email me and will share any of my experience with you that may help you thru this and know that many many blessings and good health are in store for you!


Welcome to the group. You’ve found the best place to get advice, support and information. My AVM was my right parietal and occipital lobes. I never knew I had it before I had my bleed. I understand your fear and anxiety. Honestly, this site is one of the best sources of indormation around. I wish I’d have found it sooner. Look around the site, ask questions, and know that we are all here to help if we can.

Hi Manux. Everyone is scared when they are first diagnosed with an AVM. I would be more concerned about you if you were not worried. Please remember that there are over 3200 survivors on here. Notice I used the word survivor not victim. You are no longer alone!

Thx to u, u are all so kind and nice. It really helps me a lot- Love u all.

Hey Manux,

I was so so scared when I first found out I had an AVM, you really just have to try and think positive. I know that is not always easy. It is now 6 weeks today since I had my crani operation, that is 6 weeks AVM free and it is a great feeling, so just stay positive, meditate, pray and stay calm, you will sort it all out after you have seen your doctor.

I am so glad that I found this site before I had my operation and had a bit of an idea of what was going to happen, but be careful not to only read the bad things that can happen, go to the site and read all the success stories.

Kia Kaha Taiki


Welcome! I found out about my AVM from a car accident in 2006. I have decided to leave it alone, since I have not had any bleed in the past 32 years. I do have a lot of anxiety, but I need to keep reminding myself that there are only 3% risk that I will have a bleed. I am scared to death of surgery so I am just being monitored at the time. I am so glad I found this site though, as it is helping me to get stronger to possibly be AVM free some day and be strong enough to go through with the surgery. Keep doing research & reading stories & that should help you with learning more about your AVM.
I wish you the best of luck & just know we are here for you!

Hello and welcome! You will be fine! This is a good place here1 You will meet lots of caring friends who have walked the road you are starting. My AVM arrived with aeizure too! My husband was in the shower, i kept screaming his name, of course he couldn’t hear me over the water. The Crani was really no big deal as long as you can deal with the punk hair style! unlucky for me I had my crani the same day as my AVM rupture/bleed so no time to prepare with an interim hair cut. That is my biggest advice, get a haircut NOW that is crani-friendly and easy to style because post crani. hair styles Will no longer be important as they once were. So better to be proactive or deal with the hair styles family and friends as well as neuro surgeons inflict on you under anesthesia just no good. Be proactive Ask the Dr. what will suit his needs, get sworn statements from family and friends that they will not perform their own hair styles on you while you are unable to defend yourself! Good luck and remember we are here for you whatever you need!